Human immunodeficiency virus infection disclosure status to infected school aged children and associated factors in bale zone, Southeast Ethiopia: cross sectional study

Globally, Pediatric human immunodeficiency virus (HIV) infection continues to be a major problem. A 2013 WHO report showed that approximately 3.3 million children younger than 15 years are living with HIV, with about 88% of them living in sub-Saharan Africa [1]. The annual number of new infections among children was almost halved since 2010. Regardless of this significant reduction, the number of children newly infected with HIV remains unacceptably high. According to 2017 global HIV statistics, there are 1.8 million children living with HIV. Among these about 10% of them were new infections. Of newly infected Pediatric cases, more than half of them were from eastern and southern Africa. The majority of pediatric HIV was acquired from their infected mothers vertically or during breast feeding [2]. The pediatric HIV-positive population in Ethiopia is mostly an older age group that probably vertically transmitted in earlier years when mother to child HIV transmission prevention coverage was not well established [3]. The current expansion of ART plays a significant role in reducing mortality of infected children. Studies revealed that many HIV-positive children on ART do not know their HIV status [4, 5].

The American Academy of Pediatrics strongly encourages disclosure of HIV-positive status to school-age children [6]. It is believed that disclosure of HIV status to infected children has tremendous benefit in improving the treatment outcome. The disclosure resulted in mental relief for caregivers from the burden of keeping a secret [7]. It is belived that children have the right to know their HIV status. Further more, disclosure of HIV-positive status following the child’s diagnosis is very important to ensuring child wellbeing. Different factors may be associated with lack of disclosure of HIV status to infected children. The depth of HIV status information to be shared with children, the manner and time of disclosure are things to be considered by caregivers and healthcare workers [8].

Early disclosure is more appropriate than immediate and unplanned disclosure upon entrance into the adult clinic, and also helps to reduce HIV transmission [9]. The prevalence of pediatric HIV disclosure to infected children varies widely throughout the world. In developed countries such as the United States, HIV diagnosis disclosure was reported to be up to 100% according to a study conducted in 2009 [10]. In developing countries, caregivers often do not disclose HIV-positive status to infected children. Vreeman et al. showed that the disclosure of HIV-positive status was as low as 1.6% in Kenya [11]. HIV disclosure practices in sub-Saharan African countries remain complex due to the immense influence of politics, culture and HIV surveillance limitation [12]. Studies of HIV disclosure in children are very limited in Ethiopia, and available studies are more prevalent in Addis Ababa and the Northern part of the country. In Ethiopia, studies showed that the prevalence of disclosure among caregivers’ of children varies from 16.3 to 39.5% [13‐15]. In addition to the low frequency of disclosure in Ethiopia, little is known about the associated factors of HIV disclosure in school-aged children.

In previous studies which were conducted in other areas, factors like a child’s age, the age of diagnosis, being on antiretroviral therapy (ART), caregiver-reported child depression symptoms, caregivers relation with the child and loss of a family member were found to be associated with HIV infection disclosure. Children with a deceased father tended to be more likely to know their status than non-orphans [16, 17]. These factors may vary depending on factors like sociodemographic characteristics, sociocultural aspects, awareness of care givers and knowledge of health professionals. Therefore, it is important to know the frequency of disclosure, its associated factors, the opinion and experience of caregivers and health care workers (HCWs) to design an appropriate intervention suitable with specific living and the cultural context of the society. Thus, this study aimed to assess the prevalence of HIV-positive status disclosure and associated factors among caregivers of HIV-infected children in Bale Zone, South East Ethiopia.

In this study, only about a quarter of the HIV-infected children were allowed to know their diagnosis result. Disclosing HIV status to children has a number of benefits for children, however, due to different factors, caregivers abstain from revealing their status. This finding is in line with studies done in 2013 and 2014 in northern Ethiopia which showed a prevalence of 31.5 and 33.3%, respectively [15, 19]. In contrary to our study finding, low prevalence of disclosure was reported from Kenya [9, 11], and Addis Ababa (17%) in 2012 [13]. The probable reason for the better prevalence (28.5%) of disclosure in our study could be due to a higher number of older school aged children in the study (mean age of 9.9 years). In addition, the study conducted in Addis Ababa included all pediatric patients whereas our study only focused on school aged children. The time difference between the studies could be another possible reason for observed difference. As the time passes, an awareness is created and different stakehoders work on areas to improve the disclosure status. Still the disclosure in the study area was unacceptably low.

Age of the child was found to be one of the factors independently associated with HIV-positive status disclosure to infected children. Those children in the age group 10–14 years were about seven times more likely to be disclosed of their HIV-positive status as compared to those children whose age was from 6 to 9 years. This could be due to the older children repeatedly asking the reason why they were taking medication. Furthermore, a majority of older children were also in school, and they may have had a chance to learn about HIV. This finding was in agreement with studies conducted in central and northwest Ethiopia where children of the same age were more likely to be disclosed than their counterparts not in school [13, 15]. Similar findings in other African countries reported that children were more likely to know their HIV diagnosis result when older [9, 17]. This result was also supported by qualitative findings of this study.

In this study, more than half of children in the age group 10–14 years were still not disclosed their HIV-positive status. This implies that the majority of HIV-positive children entering secondary sexual characteristics were still unaware of their HIV status. This may result in unknowingly transmitting the virus to others and challenging the strategy of reducing the new HIV infection to zero. This idea was also supported by one of the health care worker participated in in-depth interview. In the HCW in-depth interview, she maintioned that a 14-year-old female infected her boyfriend with the virus unknowingly due to lack of early discloser.

Duration of stay on ART was another factor associated with disclosure of HIV status to children. Those children who were on ART from 6 to 12 years were about five times more likely to be disclosed their HIV status than their counterparts. This finding was in agreement with studies done in developing countries including Ethiopia [19, 20]. The study in Bahirdar reported that children who have taken ART for more than five years were 5 times more likely to be disclosed their status [15]. When the children stay on ART for a long period of time, they might have a chance to ask questions about their HIV medications. The children might ask why they take the medication while they apparently seem healthy. This is also the issue discussed in in-depth interviews.

The age at which children were diagnosed with HIV infection was also associated with disclosure of HIV infection. Childeren who diagnosed with HIV at age above 5 years were about three times more likely to be disclosed their status than those diagnosed at age 5 and less. This may be due to older children asking their caregiver about their diagnosis result. This finding was also supported by qualitative study conducted on the HCWs and caregivers in which they belived that disclosure of HIV status needs maturity of children. Those caregivers who got social support from any source were more likely to disclose the HIV status to infected children than those who didn’t have social support. This may be due to encouragement and social acceptance of the children’s positive status [21].

The prevalence of HIV-positive status disclosure to infected children in Bale zone of Ethiopia was low. Having social support, caring for an older age HIV-positive child, ART follow up for long duration, and HIV diagnosis after age of five years were positively associated with the disclosure of HIV-positive status to infected children. The main reasons for non disclosure were fear of negative consequences for the child, children were too young to understand about HIV, and fear of stigma and discrimination. Health care workers should give age-appropriate counseling, support, and work together with caregivers on the processes of disclosing their diagnostic result to infected children. Non-governmental organizations should strengthen and continue their support for the caregivers on the care of children. Further research should be conducted to address the relationship between disclosure to HIV-infected children and variables like depression, stigma, and adherence involving both children and caregivers.